One common infection could kill our baby girl but one simple act could change her life forever – The Sun

Posted: July 8, 2020 at 3:53 am

ONE simple act could save this little girl's life.

Little Shahera Khan has a fault with her immune system that means her body can't produce enough white blood cells.

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It means the toddler is susceptible to infections, meaning a seemingly innocuous bug could kill her.

Shahera's life is very different to those of other tot's her age.

She can't go to nursery, make friends or really interact with too many other kids, for fear of picking up infections.

While she loves to play with her big brother, Amaan, five, she has to take daily medication and has blood transfusions each week.

If she picks up a common cold or cough, it can leave her in hospital for days while her tiny body fights the bacteria or virus.

Now, her parents are pleading for help from strangers, to offer their little girl a chance at a normal life.

Shahera's only hope of growing up like her peers is a stem cell transplant.

Speaking to The Sun her Mum Amina said she just wants her daughter to get better and to lead a normal life.

Shahera was born a healthy child and she was okay when she was small.

She picked up bronchiolitis when she was eight months old and had to be hospitalised. We were there for a week and she also picked up an ear and nose infection.

A lot of people say she has been through the wars and she has, she hasnt had an easy childhood and theres always something new with her illness

Amina, who lives in Croydon with Shahera, her husband and Sharehas little brother said that she had Shahera at home for just a couple of days before she had to go back to hospital due to coughing fits.

She recovered at home but within two weeks the family were sent a letter that detailed she had low immunity.

Amina said that little Shahera had a rash on her face and said doctors then had to do a biopsy.

They were scratching their heads really. After a biopsy they found that she was an unusual case.

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Her skin was pretty bad at that point and they gave her steroids and antibiotics.

At the Evelina hospital they ran further tests on Shahera, but sadly she then had to be hospitalised for bacterial sepsis.

Amina said that all of this happened during the 2018 World Cup and said she remembers it so well as temperatures were soaring and she was trying to control little Shaheras temperature.

She was so thirsty and her temperature was 38/39C.

How to join the stem cell register

Little Shahera needs a stem cell donor - here's how you can register

You can join the stem cell register online. All you need to do is fill out a registration form and you will be sent out some swabs.

You will need to take some samples, usually from the inside of your mouth and then send them back. As soon as they are received you'll be added to the register.

You'll remain on the register until you are 61-years-old.

If you are a match for someone in need charities such as Anthony Nolan will help guide you through the process.

Around 90 per cent of people are able to donate via their blood stream with 10 per cent donating from bone marrow while under general anaesthetic.

To find out more and to register you can visit the below sites:

Then the hospital found that one of her white blood cells was completely wiped out, she was very sick and it was at that point that the doctors mentioned a bone marrow transplant.

Once again Shahera was allowed to return home and she made a good recovery.

Then when she was just one her rash appeared again and more tests found that she had a rare immunodeficiency.

Shahera now has antibody immunoglobulin treatments every week and Amina said this makes a big difference to her quality of life.

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The issue now Amina says, is that doctors need to find a way to continue to treat Shahera so she can do all the things that other little girls can.

Doctors have given the family several months to find a donor and have said the transplant could take place as early as next spring.

Finding a donor though will be a struggle for the family as just 20 per cent of patients from BAME backgrounds find the best possible donor match.

This is in comparison to 69 per cent for people with white European heritage.

Finding a donor would be a big relief for us, because hopefully it will maker her better

Shahera is of Bangladeshi origin and Amina said its difficult for the family to find someone from their community.

We are part of her journey and it has been difficult but we have been very patient and we are still working with consultants and professors.

At the moment she is doing as well as she can be and she has been shielding due to Covid-19.

Finding a donor would be a big relief for us, because hopefully it will maker her better.

Amina said that the family are not only campaigning to find a donor for Shahera but for others in the same situation.

What is immunoglobulin therapy?

Little Shahera has to have antibody immunoglobulin treatments to keep her well

It is a blood-based treatment that contains antibodies in order to fight against infections.

People are given this treatment when their immune systems do not produce enough antibodies.

Some patients are at a higher risk than others.

Charity PID UK states: "Clinical trials have shown that for people with immune deficiency, immunoglobulin treatments result in fewer infections, and those infections that do occur tend to be less serious.

"There is also evidence that people with immune deficiency are more likely to enjoy good health over many years if they receive immunoglobulin correctly. Finally, your wellbeing and your energy levels are likely to be better if you are on immunoglobulin.

"It may take several months before you feel these benefits.

Everything has been put on hold because of Covid but donating is such a simple process.

A lot of people have misconceptions about stem cell donation, but donors can save lives.

Due to the coronavirus lockdown little Shahera has spent lots of quality time with her family.

Amina said she is doing well and has enjoyed spending even more time with her older brother.

She likes to play cops and robbers and fireman Sam but she also enjoys doing girly things too like looking after her dolls.

Now that Shahera is a little bit older, Amina said she is more aware of her rash and will sometimes look at it and point.

She is very aware of the transfusions and understands what is happening and she is very well known in the ward.

She doesnt really cry when they prepare her for transfusions.

A lot of people say she has been through the wars and she has, she hasnt had an easy childhood and theres always something new with her illness.

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But shes a tough little girl and she is doing really well.

Sarah Rogers, register development manager at Anthony Nolan says: Little Shahera wants to go to nursery, learn and make more friends just like other toddlers olds across the UK. For this to happen she needs a stranger to donate their stem cells.

"If youre aged 16-30 you can join the register online and well send you a cheek swab in the post.

"If youre found to be a match for a patient, you could donate your stem cells and give hope to families like Shaheras. Your support could help us give a patient, their family and their friends a second chance of life."

Continued here:
One common infection could kill our baby girl but one simple act could change her life forever - The Sun

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